Wednesday, 15 December 2010
A memorial service will be held at 1:20pm next Monday, the 20th December at West Herts Crematorium, High Elms Lane, Garston, Hertfordshire, WD25 0JS. This will be followed by a gathering for friends, family and colleagues at Bar Bodega, 151 The Parade, Watford, WD17 1NA. There is no formal dress code but please let your attire show Spence that you made an effort for him.
Please do not send any flowers - that money could be used in a much more lasting way. Any charitable contributions are considered to be private but we would prefer that any donations be made to either The Peace Hospice or Cancer Research UK. The Peace Hospice was responsible for giving Spence a fantastic amount of love and support in his last few weeks. He could not have spent his remaining time in a more special, caring and peaceful place.
Hot and cold food and drinks will be provided at Bar Bodega, courtesy of Spencer and John. We will be making a collection for The Peace Hospice there and any contributions will be warmly received. Free car parking for Bar Bodega will be available a short walk away at 44 Clarendon Road, Watford.
Please join us. Not in mourning Spence's death but in celebrating his life and the many and varied contributions he made to everybody who knew him.
Please remember that Spence found sobriety in the last 9 years and, even in his darkest moments over the last year, stoically maintained sobriety. If you wish to raise a glass or two to him then please do so. However we do understand that some of Spence's friends enjoy similar sobriety and we would ask that they find similar strengths to join us for the afternoon. It's all too easy at these times to seek to blot out the pain, Spencer wouldn't have wanted that.
Wednesday, 24 November 2010
The Peace Hospice crew are trying to get me permanent funding in this Hospice, or else it may be at another nursing home place (which I don't want). The bottom line is that the lovely crew here are in agreement that my home is not an option, as I need too much care and I think they would love me to be able to see my days out here. But there are people who clutch chequebooks who need convincing, who don't know me and I, to them, am just a name on a piece of paper.
Speaking of 'home', I have gone back to the flat to pick up a few things this afternoon and try to sort myself to attempt to do some work done. You will not believe how much energy it takes to get up and about. I hate being out, its too much - its depressing, painful and, well, ... can't explain but just a car journey or a flight of stairs fucks me, physically and emotionally, as you feel how detatched, different and weak you really are.
And in regard to 'work', well my remit is to somehow dump 14 years worth of data that's in my brain out into a understandable-for-someone-else format. My best friend has been up to support me today, but it still ended with very little actually done and many real tears of frustration and sadness ... thankfully my best-friend does good best-friend hugs.
So, I'm pleased to be back at my Hospice (like I never want to leave this room again!), but I worried. I'm worried I won't get a permanent placement here - its really a hospice for the short-term terminal and I've got a few months, I think. Everyone here seems to be fighting for me, so let's hope. I'm due a bit of "luck" and having a room here until 'The Bitter End', is all I'm asking for.
The thought of life in an inferior nursing home, or having to install hospital beds and nurses into my flat just seems horrendous after spending time here. Like everything in my so-called-life in the last 12 months, we'll just have to wait and see ...
I haven't blogged much about my day-to-day routine and it's because there's too much detail to go into and I am just sick to death of talking or explaining about it. Just assume that everything is hard bloody work but everyone here is amazing and kind and all that can be done is being done ...
The only way I felt I got close to summing up my feelings, was by saying to someone that "it is now my full time job to wake up, minimise pain and get back to sleep". Its my job just to live. Anything on top is a bonus.
I'm frustrated. I'm tearful and I don't want to write this sodding blog but with hundreds of well-wishing friends, family and near-total-strangers emailing me, its a duty that I need to do.
Bad mood. Sorry. I'm "OK" just stressed about work and future of the Hospice. I'm sure you can understand. I
This blog in unlikely to be updated as much now, ironically, when there is the most to write about, but, well ... You've had nearly a years worth of free content out of me and ...
Sent from my BlackBerry® 9700 wireless device
Saturday, 20 November 2010
I can't write very much at the moment, as I fall asleep. I'm very heavily medicated writing anything just pulls me into Mr Snoozy World. When it comes to the quick email/txts on the Blackberry, I get double-vision and a simple two line reply becomes a headache.
However, this morning, I've taken this rare window of opportunity of 'a tad of energy' to state that ...
1. I've read every txt, email, Facebook message and letter that has been sent.
2. I've listened to every voice mail
However, I will not be able to reply to hardly any of them, due to low energy and the fact that there is just too much to go into with certain people.
What I need to do is to try to update the blog to tell you what's going on but again, the above apply.
I need a PA.
But in the absence of that ...
1. I am in a Peace Hospice in Watford - I am happy here (relative)
2. I will be sent home in a the coming week
3. I have a 'family meeting' on Tuesday where we will be told of the plan
4. I have been looked after amazingly, but there have been some tough times - lots of opportunities for tales about lack of sleep, sleeping non-stop when you don't want to, nightmares, night-sweats, tablets the size of rodents, constipation from hell ... all the kind of things I normally can draw out into a separate blog entry ... but now I'm on 'the other side', it hardly seems worth mentioning somehow.
5. I rarely want to see people - not personal, but the snoozing and lack of 'hey, it's me!', make it hard to be entertaining. I fall asleep on my guests, walking up 3 minutes later, talking shit. Also, guests want to talk about my illness all the time and I would much prefer it if we could about something else. I mean, sure, it's gonna come up and I will talk about it, but I like it when people bring me tales and gossip from the outside world.
I am snoozing more as I write this. There is a ton of new medical stuff I could tell you - lots of interesting new procedures and boxes that I have strapped to me, but I don't have the energy today.
After all, this blog is really just to say that I'm reading all your message of love, that they are appreciated and I'm sorry it's one-way traffic at the moment.
Love you all.
(oh, if you were having trouble viewing my weepy video above, it should now be fixed)
Friday, 12 November 2010
What can I say? Take a seat, please.
For I have the news that no-one here wanted to here.
It's the end of the battle, the end of the war and I'm sorry to say I am defeated and all hope is lost.
I have been given "a few months" to live.
There is no more treatments to offer, no more 'we could tries'. It is, at last, over.
I have been moved from the bedlam that is Watford General, to the peace of the Watford Peace Hospice, where I shall be staying for a week or so. It's a beautiful place, with lovely 'rooms' (no wards), all with en-suit and even wi-fi. It's a great place - the relaxation and facilities of a nice hotel, with the 24/7 on-call medical team at the touch of a button.
I'm going to leave you now, in some cases with a hundred questions you want answered, but for now, that is all.
I am not really taking calls or answering emails or txts ... it's just too much at the moment. My head is somewhat spinning and I am tired. A few days here, of proper rest, some talking-therapy and some adjustment time and I know I will be much more at ease with what is happening.
It's been about 24 hours since I found out and it feels like 7 days.
I'm going to leave you with a song. It's a song I've always liked, from a band I've always liked. It says just about everything I need to say right now.
When all is said and done, the hardest part of all of this, is leaving you.
Tuesday, 9 November 2010
Please do not ask me 'if I've heard...' or 'how did it go'.
Again, depending on results it may take a while before I can 'go public', as there are people I will need to speak to.
I know you mean well and its appreciated but you'll know when it's time for you to know.
Sent from my BlackBerry® 9700 wireless device
Friday, 5 November 2010
But a frustrating experience with Mrs Doctor today, resulted in me not going back to hospital on Sunday to have the 2nd R-ESHAP session, but to go to be 'urgently fast-tracked' through a CT/PET scan session.
So, another 'radioactive' internal image scan ... to find out what difference there has been so far. Remember, we were not going to be doing this until after TWO sessions of R-ESHAP.
Why suddenly change the routine? Well, because my pain-killers are going though the roof (I started on 'no more than 40mg a day' to my latest instructions of '4 x 20mg 'fast release' Oxy and 2 x 80mg 'slow release' Oxy tablets. (Total: 240mg a day). For the record, I've never taken any more than I've been advised to by my medical team. I always explain what's going on.
Also, I feel like crap most of the time, my sleeping is fucked due to background pain and ... fuck me, how many times have you read this tirade. But to sum up, they are concerned that I've had no real relief from the last R-ESHAP treatment. I have my private thoughts on this but will keep my mouth shut for a week.
Finally, the Mrs Doctor and lovely my Key Worker agreed that I looked like a bag of shite, although I'm paraphrasing ever-so slightly.
So, apparently I'll get a call on Monday to arrange my photo-shoot on Tuesday. Due to this fast-track, I should know 'something' soon. They said the results will be accessible the next day. Let's call it Friday then.
All bar the slightly angry conversations and minor details, you're basically up-to-date with where I am.
Can't write any more. Too snoozy. More soon.
Thursday, 4 November 2010
I've been donated this ultra-comfy leather sofa by one of these lovely, lovely friends.
As with most things in my apartment, the old sofa was included in the flat rental. My flat was a 'show home', designed to sell others in the block. So it had some odd things in it, large silver balls and other such 'art'. And a bloody white sofa.
White furniture that you sit on is never a good idea at the best of times. But when your primary user sweats, dribbles, vomits and falls asleep on you a lot, you become grey and lifeless ... a bit like myself most of the time to be honest. They say you start to look like your sofa after a while, don't they? Or is that dogs?
So, farewell then chemo-couch. We spent some good times together. But let's face it, in the last 12 months we spent a lot of shite times together. But you've been there for me, supporting me, perfectly positioning me to consume more TV in 12 months than I have done in my entire life. You did very, my grey friend. You shall be missed.
Yet again, I've been sweating all night and I'm propped up in bed as I try to write this on my Blackberry and I keep falling asleep with it in my hand. I might move to the sofa in a bit, as I figure being leather, when I sweat all over it, I will gentle slide off it onto the floor. I think I might enjoy that. Weeee.
So, "thank you" so much Ms.F, for the sofa. Or The Kemo-Kouch as he shall be known. He's amazing. And thanks also to Ms.T. and the gang of Real Men who seemingly effortlessly made the old sofa 'go away' and this new one 'appear'.
Charity, it would appears, begins at my home.
Sent from my BlackBerry® 9700 wireless device